Unpredictable as Billed

Lucy’s headaches have been under control since Monday, and though she has been exhausted, she’s been cheerful and playful. Thank you for all of your prayers for her. Your cards and other treats encourage her. She is more aware this time around of all the people loving her.

This week she started to dread being wheeled back and put to sleep, even though I was holding her hand. She would cry when she saw all techs gather around smiling, and would fight the sleepiness. So yesterday they let me carry her back so that she fell asleep in my arms, and they said she could do this every time if we wanted to. This is a relief to both of us.

She took her first ballet class Tuesday evening, which thoroughly wore her out, but it is the perfect weekly activity and we are so grateful for this informal class letting her join for the month. She is a little athlete; I loved watching her focus and execute with precise form after general anesthesia that morning, among her other limitations!

Wednesday we checked into a beach house about 30 minutes away graciously loaned to us by friends, and Richard drove down with Jack and Garrick. Jack has been well taken care of by our community in Atlanta, and Garrick had a ball with Bobbi and G. We are all so glad to be together, bickering and all!

As Richard and Lucy sat down in the waiting room this morning at 7 for treatment, they received the news that the proton beam was down again for 2 days, similar to last week. Apparently this is very rare, but one of the techs told us he was surprised this didn’t happen more often, because it is such a precise instrument, with so many things that have to be lined up perfectly in order for it to operate properly.

So this means Lucy has a bonus time without treatment, and they will start again on Sunday the 25th. This also means we are not sure when we will be done here, if these hitches keep coming. But we are grateful for an unexpected break from anesthesia, and she will get her needle out tomorrow so she can swim this weekend. Ponte Vedra wind, cold froth, and crushed shells underfoot… hard to feel self-pity!

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3 Comments

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3 responses to “Unpredictable as Billed

  1. sb

    Glad to hear y’all will be together this weekend! And tell Lucy we want to see her newest ballet skills ASAP!

  2. Melissa

    I hope you have a wonderful weekend together!

  3. Jenna

    Does Jack need to be picked up from school ever or need someplace to play in the afternoons? What about dinners for jack and Richard? What are we do to help?

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